anna's blog

Our beautiful, gorgeous little girl, Anna, has leukaemia. She was diagnosed on Monday 5 December 2011.

Final day of treatment

20140205-200118.jpgToday is officially the last day of Anna’s treatment for leukaemia.

It is two years and two months since her diagnosis. She has had oral chemotherapy for most of those 789 days, regular intravenous and brain/spinal fluid chemotherapy, lumbar punctures, daily/weekly/monthly steroids and numerous blood transfusions.

She’s had a portocath put under her skin, a feeding tube down her nose and one very unpleasant bronchial wash.

She has been on antibiotics, antivirals, antifungals, antiemetics and a cocktail of other drugs to counteract the side effects of all of the above. She has had IV fluids, electrolytes, overnight liquid feeds and saline drips.

Pain relief has ranged from calpol to morphine.

She is a frequent visitor to x-ray, and also had ultrasounds, ECGs, CT scans, MRIs and a bone density scan.

She is known to many of the departments at sick kids – neurology, endinocrology, respiratory, orthopaedic and oncology.

I’ve lost count of how many nights we’ve spent in hospital or how many outpatient appointments she’s had.

She still had some walking ability when she was diagnosed but now she isn’t able to bear any kind of weight at all. Her bones are like tissue paper and break with the slightest trauma. She has had seven fractures (femur, knees, ankles, feet, wrists). We have no idea if she will recover any strength.

She’s also had three bouts of shingles, staff epidermidis (at least twice), kiebseilla, para flu, cellulitis, mouth ulcers, UTIs, aspergillus, rsv, septic/deranged liver, various other bacterial/viral infections and an extremely severe skin reaction. And there have been a couple of times when we thought she might not make it.

Although today is a day of celebration, it’s also something of an anti-climax as her steroids were stopped some months ago due to her getting continued infections. She had her last dose of chemotherapy over a week ago as it was stopped due to her low platelets and currently we are in sick kids as she has several infections. She had a platelet transfusion this morning and needs a red blood cell transfusion tomorrow. She’s also had her monthly 4 hour pomidronate infusion today today – her bone strengthening treatment.

She was due to have her final bone marrow/lumbar puncture done today but wasn’t well enough. It will probably take place next week. She still needs to have one catch up intrathecal/general anaesthetic, likely to take place on fifth of March. We will continue to come to clinic regularly and she will be having pomidronate monthly.

However, we are glad to get to today. She is still my beautiful, gorgeous daughter and now we can start planning for the future – Anna, me and Nathan. X

Advertisements
9 Comments »

Shingles, fractures and steroids

20131204-221420.jpg

20131204-221533.jpg

Anna is still in hospital. She’s now had a further two weeks of intensive anti-viral treatments, with the accompanying hyperhydration and anti-sickness drugs. Yet she still has shingles, with a new spot appearing even yesterday. IV acyclovir is generally the most effective treatments for shingles But for some reason it doesn’t seem to be working effectively for Anna. We are currently waiting on the results of blood tests to check how she is responding to the aciclovir.

She has her sixth fracture of the year – in her left ankle. Her bones are now so incredibly weak that the slightest trauma can break them. It’s the result both of being non-weight-bearing and also the steroid treatment. We are trying to use the hoist for any kind of moving and handling. It’s the safest way to do it.

Anna’s recurring infections (potentially life-threatening) and increasing incidence of fractures mean her consultant and medical team have finally come to decision that she will have no further steroid treatment. She would have been due a further five steroid doses before the end of the leukaemia treatment. I’ve found it a really difficult decision and I’m getting emotional again even when I write this. I just want to feel we’ve done absolutely everything to beat the leukaemia. There’s no point in having strong bones and no infections if she doesn’t survive the treatment. I trust the team and know that this is not been an easy decision and there has been a lot of thought and discussion. It’s still hard though…

Nathan is struggling. He’s missing me and he’s missing Anna. I’m so lucky to have good friends who will take him in the morning and after school (thank you Aileen, Louise and Courtnay…) but all he really wants is to be home in his usual routine. I’m making a point of trying to drive back from the hospital to pick him up from school and then bring him back to the hospital so at least he can see me and Anna. And granny, grandma and Clare are all helping out to allow me to do this.

Princess Anna, as she now wants to be known, is on really good form, despite all the difficulties. She is very clear about what she wants, makes people curtesy when they come into the room and and scores them and me for how
well we’ve hoisted her.

I really hope we see improvement tomorrow. It feels like this is never going to end but I know that it willl.

20131204-221443.jpg

4 Comments »

… And a fractured ankle…

Anna’s shingles are not too severe and she is recovering well. However, the treatment for it (IV aciclovir) is causing her extreme nausea and fairly frequent vomiting. She feels absolutely rubbish.

Her right leg has looked a bit odd and I asked the physios and doctors to check it. She had it x-rayed and it is fractured too. Just like her wrist, it has happened at least a couple of weeks ago and is now already healing. It is slightly displaced but fortunately should become straight as she grows and the bone develops. Her muscle looks like it is starting to waste which is a serious concern. Physio are coming back tomorrow to review it.

Her blood results have dropped today and she’s had a blood transfusion this evening. She is still getting massive amounts of IV fluids (electrolytes). We’ve tried to give her usual feed over the last few nights but she is simply not tolerating it at all. These are all her tubes and bags hung up, attached to either her NG tube or port a cath (direct into her bloodstream).

20131029-234619.jpg

Although she is appearing quite well in herself (apart from feeling so sick all the time), there are lots of things happening. None of it is enough to cause serious concern at the moment but as usual we’re watching very carefully. Luckily she’s had auntie Clare and granny here at various times today to keep her amused and distracted.

Just now, she is coughing, has just vomited and is waiting for her next dose of aciclovir along with antiemetics. She can’t get comfortable and feels so nauseous that we’ve asked the doctor to look at her. Her stomach is severely distended. I’m hoping that both Anna and I have a good nights sleep but I think it’s extremely unlikely.

20131029-234708.jpg

9 Comments »

%d bloggers like this: